Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

What to do now?

SubonicXP Message
1 May 2011, 10:12 PM

Hello, my name is Cameron, I'm a 21 year old male who has been recently diagnosed with Muckle-Wells Syndrome. For generations and including my own childhood my family has been picked and poked in trying to figure out what was wrong with us. Both my mother, brother, deceased grandmother, deceased great grandmother, and great uncle have the same symptoms but it was only until myself, recently, that they figured out it was Muckle-Wells Syndrome. Well, I had since move away from the state I lived in with the doctor I had that discovered the diagnosis, actually did awhile after I left. I now live on my own and my doctor contacts me about this medicine, Kineret, as I see several people here know of it, that she suggests. Only problem is, I have no health insurance, can't exactly afford any, and really have no idea where to go from here. My condition really makes it hard on me to work since it seems my joint pains are extremely frequent and painful. I only worked once, not even for a whole year and currently do not work and live with a friend. I'm really at a loss since it would be really nice to live a normal pain-free life, and maybe even hear like a normal person but I simply don't have the means for any medicine for my condition and am wondering what I should do. So I ask, suggestions?
tarah Message
2 May 2011, 05:37 AM

Hey there, My name is Tara and my son also has dx. dx in 2005 aftewr symptoms all his life. He is now 15 and takes Kineret daily and thankfully our insurance pays it. Not sure if you have contacted the NOMID alliance or stopCAIDnow but they have lots of info. and can probably tell you your options. Give me a call or e-mail or 270-334-3215 and I'll try and help you in any way possible. I am in KY and on central time. Good luck, hope to hear from you!!! Also try contacting NIH in Maryland.
nomidalliance Message
3 May 2011, 10:09 PM

Dear Cameron, I am sorry to hear that you are suffering, and that many in your family have also been dealing with this for generations. There are options for you, and the good news is that the medications for MWs work very well. I know that there are some other patients that do not have insurance, and the Ilaris patient assistance program has been helpful. Info below from that site: If You Do Not Have Insurance If you have no insurance or your insurance does not cover treatment with ILARISĀ® (canakinumab), additional patient support may be available for those who qualify. You may be referred to other resources, such as: The Novartis Patient Assistance Now Program , which is an easy-to-use resource that offers Novartis drugs free of charge to those who qualify, as well as additional information about how to take care of their health Partnership for Prescription Assistance (PPA). The ILARIS Patient Support Program can also refer potentially eligible patients to the Partnership for Prescription Assistance. The mission of PPA is to increase awareness of patient assistance programs and boost enrollment of those who are eligible. The PPA offers a single point of access to more than 475 public and private programs, including nearly 200 offered by pharmaceutical companies CALL 1-877-ILARIS1 (1-877-452-7471) The National Institutes of Health (NIH) in Bethesda, MD is doing a clinical trial for patients with CAPS, and the care they give is for anyone, and does not require insurance. Give me a call at 415-831-8782 to talk more about CAPS, and some options. You are not alone! I have heard from a few others your age just in the past few weeks that are newly diagnosed, suffering and seeking medical treatment. We are here to help you. Where do you live right now? We can connect you with doctors in your area too. I am the founder and president of The NOMID Alliance, an RN and mother of a child with CAPS. Our website is: and you can also email me directly at Best wishes, Karen Durrant President of The NOMID Alliance